Hope is in the heart of us.

It’s leading up to our second year of supporting Awareness Month as Army of Us and we’ve decided to do things a little a differently.

For many families who live with Rett syndrome, Awareness Month is an exhausting month-long reminder. A constant barrage of facts and statistics roll up your wall, as we all share images and stories about Rett syndrome, desperately trying to create awareness.

October has always been a tough month, tough to prepare for and tough to manage, with so much expectation and added responsibility for families; putting this kind of added pressure on you is just not what Army of Us is about.

This is where the idea of the Hope campaign comes from; we want to spread a positive message during October (to families and their networks of friends) that we have a lot to be hopeful for. This has been an incredibly successful year for advances in Rett syndrome and we believe things will only get better.

Rett takes so many things but we also have so much to be hopeful and grateful for.

We have known about the cause of the condition, and known about the potential reversibility for some time now, but that shouldn’t mean we stand still whilst we wait for a cure.

The past year has shown us personally and as a community why we can be hopeful and positive today.

Research discoveries about the mechanisms of long genes, and the progress with x-inactivation means potential treatments may be closer.

The orphan drug approval and results around Trofinitide mean we may be able to improve some symptoms now while we wait for a genetic fix.

These discoveries and other drugs in trial, like Copaxone and Ketamine, will help keep our loved ones affected by Rett stronger and healthier, aiding them to learn more skills and gain abilities right now.

The lower prices and greater acceptance of eye gaze and things like the Steve Gleason act in the USA are also very important breakthroughs. Eye gaze devices are changing the way people treat our girls (and boys), as we discover new ways to break down that communication barrier for Rett syndrome.

With all of this in mind, we’ve built a whole bunch of goodies that will help make your Awareness Month easier; we have redesigned our traditional “Rett fact cards”, which can be printed out and handed out at school. The Rett fact cards will be connected to our what is Rett syndrome blog.

We’ve also created a new group of cards; we call them “hope cards” and we hope you’re going to want to share them as much as we do.

Our hope cards contain the information that has brought us hope over the last year (and a bit longer), in a simple sharable format. Something we can share with our family and friends to say, hey, look what’s changing, we are beating this thing.

We have redesigned the posters and have added all the new girls, and we will keep adding more girls (and boys) through awareness month. So keep your eye out for them early next week.

The pictures we have been collecting for the last few months are filling the Army of Hope album and they have a very special purpose.

If your daughter (or son) is included in this album, please make sure you go to the album and “tag” her name in. It’s easy, click on her photo and click tag, then type her name, then leave a special message for her in the comments. Something as simple as I love you, or a few lines of your favourite poem.

If they’re not represented, please send us a picture so we can include them.

We promise you it will be worth it when October starts 😉

We’ve started a week early so you can use the stuff we make and be prepared for any of your Awareness month needs. Like printing our fact cards and posters for school or class to explain Rett syndrome. We want to make October easier for you, and we feel giving you access to our goodies a little earlier will do exactly that.

Profilomatic

Profilomatic has been totally rebuilt and now works on mobile devices 🙂 You can upload your favourite picture from your phone, apply an Awareness Month frame, then share.

More hope or fact cards

If there are other hope cards (or fact cards) that you would like to see made (or translated) please give us a shout (duncan@armyofus.org) and we will do our best to make it happen.

Other campaigns

As well as our HOPE campaign we will be supporting other campaigns from our friends too; there will be a host of profilomatic campaigns like the #realiferett for #rettober campaign in Australia and #nomoreemptyarms here in the UK.